This blog is dedicated to discussing the ups and downs of a family with a child who has Mitochondrial Disease. A blog seems to be a good way to share our experiences as a family and to hopefully connect to others with similar experiences.

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Thursday, February 05, 2009

Note: This article was first published in my company's eNewsletter and then posted on its blog. Several folks have given me positive feedback on the article/post, and I thought it would be appropriate for this blog as well.

A few weeks ago, a friend forwarded me an article predicting that in 2009, business leaders need to be Chief Meaning Officers. It proposes that given the current crises facing U.S. citizens, business leaders need to make their brands “arbiters of meaning.” That is, consumers will naturally look for products and services – interactions really – that have meaningful alignments with causes greater than their products or services.

The article and its premise got me thinking. Thinking about how and why we tend to look for meaning so much more in a crisis. Thinking about how much richer life is when we do find that meaning. How it expands our world-view and makes us more empathetic and unselfish and grateful.

This type of crisis can be broad (e.g., our economic crisis), but it can also be as specific as it was a couple weeks ago when Captain Chesley Sullenberger was somehow able to land his US Airways plane in the Hudson River without losing a single life. How many of us got teary-eyed while reading the stories of the passengers and their families that came out in the days following the event? How many of us looked at the world a little more wide-eyed, hugging our spouse and kids a little longer than usual? I know I did. And I know those passengers and their families and friends are forever changed. I know partly from experience.

Last January, my then five-year-old daughter, Roxie (who has special challenges caused by mitochondrial disease, which weakens her muscles, brain, and lungs), was fighting for her life in a hospital ICU. Her lungs were attacked by a virus that triggered secondary pneumonia making it very difficult for her to breathe. As a result she spent about three weeks in the hospital. One day it got so bad, in fact, that several doctors and nurses had to manually help her breathe for over an hour. During that time, my wife and I truly thought we might lose our daughter. We found ourselves holding each other, repeating half-silent prayers, begging any higher power that would listen to “please help Roxie.”

Roxie did make it, and a couple weeks later, we were home and very happy as life got back to normal.

But it didn’t get completely back to normal. The experience changed us. Over the next few months, I found myself engaging in more and more long conversations with friends, family, and even complete strangers, searching for meaning and human interaction.

Reflecting on these examples, I think at some point, in any kind of crisis, we realize that we don’t have control over everything, that we must rely on others, to trust others to help us. We start to see beauty in things. We start to find more meaning in everyday interactions, and we realize that “hey, maybe I really can live in the moment.” We find ourselves looking through a different filter than we previously had.

I think this is what those passengers on US Airways flight 1549 are feeling. And I think this type of experience is happening in some small way across the nation as each of us deals with the uncertainty and instability of these changing times. More and more of us are understanding how important it is to listen, to pay attention to the stories of other people, other nations, and other religions. People want to stand for something. We want meaning in our everyday lives, and we are starting to understand that to find that meaning, that beauty, we’ve got to slow down, look around, and breathe.

Meet Roxie

Roxie turns 9 in November of 2011. Although she has had to work hard her entire life to learn basic skills like sitting up or using her hands, she is a happy little girl. Roxie has Mitochondrial Disease which has resulted in profound hypotonia, epilepsy, sensory integration disorder, cortical vision impairment, and fragile health. She loves music, her family, and interacting with other children.